The Lack of Care for Migraineurs in the VA System

Wow. It’s ironic that my disability rating is highest for migraines, as a veteran, but I can’t get reliable care for them in the VA system. I was told that the Botox clinic is full, and that my Metaprolol, (which wasn’t working well anyway), was making my blood pressure too low, by a PCP/GP, so he discontinued it, without replacing it with anything. My referral to an outside neurologist took over a year, and I have to be re referred before I can see her again!

This isn’t a pity party, this is me highlighting the current thread of little to no reliable care for veterans. Has anyone made the connection between sub standard care and the high rate of veteran suicides? Gee, I wonder.

I would love to hear from other vets. How have you navigated the VA system? What treatments, if any were offered? Are you a woman vet, surrounded by male doctors playing Russian roulette with your medications? Stand with me to get care and prevent the hopelessness!

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Comments

I am also a female vet with migraines. I use Tricare because my hubs is retired military, but I didn’t find that to be any better at times. Whenever I needed a referral, they would always tell me that it’s not really a migraine because I can come to the appointment. Literally sitting there with sunglasses on, in my PJ’s, with no shower, I just started demanding care. I told them what I wanted (a referral and pain meds), where I wanted to go (previous research goes far when dealing with craptastic care standards), and when I would be calling back if I didnt have a referral by that point.

Unfortunetly, you might have to be demanding because they dont get paid to care.

I, too, am a woman vet with migraines attempting to navigate the VA system. However, it’s even more difficult because I am a nursing mother, and there is nothing any of those doctors can say that will make me wean my baby. I will suffer in order to nurse because frankly the idea of bottles seems so messy and inconvenient to me, not to mention my son will not take a bottle. I have suffered from migraines for about 10 years now but was only finally believed and diagnosed 3 years ago. The VA doctors kept saying “have you ever been diagnosed with migraines?” I hadn’t yet, and they would reply “then you’re not having migraines, you’re having the worst headache you’ve ever had.” No lie doctors across the US have said that to me in the VA system and private system. Ugh!

Finally diagnosed but I was nursing my first child when it happened. They gave me Tylenol with Codeine bc that was safe while nursing. Eventually they got better when I became pregnant with my second child. Now they are back again with a vengeance since 3rd trimester. I was brought to the ER for a complex migraine bc they thought I was having a stroke. Couldn’t talk, had a panic attack, couldn’t remember the words I wanted to say, kept repeating words mid word and mid sentence or repeating the entire sentence over again. Sucked! So they sent me to get Botox but Botox clinic was full so they sent me out with VA Choice. Made my appointment then the VA called to say I couldn’t get Botox because I am nursing. So I had to wait to see Neruology. I had had a migraine constant for 4 months by this time. They put me into pain clinic as an emergent add on and gave me a steroid nerve block. I cried, not from pain but because I forgot what it felt like to not have pain. The numbing medicine made the migraine go away immediately.

So I’ve been getting these shots since November or October. About every 4-6 weeks. Now I read online that it’s bad and will cause hair loss at injection site. I have no idea what to do now even though they are getting worse and I tried seeing Neurology but they said the soonest appointment was 5 months away.

I just found out that the VA is in trouble again for all kinds of mistreatment of Veterans. Ugh I understand the frustration.

I know, I’m with you! A few of my worst migraines were when I was pregnant. I’ts tough to weather migraines with young children to care for. I am just now going to see neurology again, so I will see what they can do. I know what you mean with treatments; many can cause bad side effects, like steroids or seizure medications, so it’s a benefit vs risk gamble. I hope neurology can help you further, and remember, bottle fed happy babies are better than nursed babies with very sick moms! I did both, some early nursing up to 6 months, and bottle as well. Now, my girls are healthy and in high school. Please don’t hesitiate to reach out to me, and you have my thoughts and prayers!

Hi Jcollup, Sorry to hear you are having such a hard time with the VA. I get most of my care through Tricare but what I do get at the VA is very good. (It is at the CBOC not the hospital which may make a difference.) My primary care provider is really good and she put me in for an acupuncture referral which helped a lot with my vertigo. The problem I had was when I needed a renewal, I finally had my Psychiatrist put it through. Because I see her regularly and I swear the voice mail doesn’t work so when you leave a message for anyone they never get it.
Under Veterans Choice if they can’t get you an appointment (after you have been referred) within 30 days, they have to let you go outside the system. Put in a request for a referral to the neurologist and give them ten days to get back to you. Then start calling, every couple of days until they tell you they referred you. Once you have an appointment, you can call the doctor’s directly and request one that is sooner and ask to be put on the cancellation list. If you meet the Botox criteria they should be referring you to a doctor in the community, if the clinic is full. If you continue to have problems I would first change primary care providers, I know mine had a waiting list, because she was so on top of things. (Some of my friends were trying to switch to her.) If you still have problems talk to your congressman. Good luck.